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Miracles happen for those who will see: An expensive drug, a rare disorder, and a doctor who prays
By Nan Cobbey
2002-129
5/21/2002
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[Episcopal News Service]
It was a long shot, that plea for a neurologist.
The trip from the U.S. to Warri, Nigeria, is arduous and far from cheap. There would be no payment for the expertise or the time spent, and it would require two weeks. The office of Anglican and Global Relations wasn't even offering to foot the entire bill for the airfare, only $1,000. Its director, the Rev. Patrick Mauney, needed either a well-heeled or well-funded volunteer if he wanted to fulfill a promise made during the presiding bishop's visit in January.
The Rev. Hope Imoroa in the Diocese of Warri suffers from Meige's syndrome, a rare disorder that causes spasm of the eyelid and facial nerves so that the eyes are constantly shut tight. Imoroa is functionally blind. There is a treatment and it involves a risky, delicate operation and one of the most expensive drugs in the world: Botox (botulinum toxin), the drug so loved by wealthy Hollywood stay-youngs.
Risk of paralysis
The procedure requires specialized expertise because, unlike the injections given by neurologists and dermatologists to combat wrinkles, the area of the eyelid is more fragile. The lids need to be paralyzed, but only partially, by injecting the drug into different areas. There is risk of piercing the eyeball and if the drug is placed even a few millimeters away from the target, the lid could be paralyzed shut. No more than a few dozen neurologists or ophthalmologists in the United States have extensive experience with the procedure. Most see no more than one patient with Meige's syndrome in their lifetimes. Not one doctor in Nigeria has experience with the procedure.
Mauney's long shot was to entice one of those few dozen doctors and then convince him or her to train Imoroa's own neurologist. Mauney wrote all medical mission organizers he knew. Episcopal Life printed a plea. Calls and e-mails went out to anyone who might be able to help.
Answer to prayer
On May 1, a response came. A Nigerian priest serving Grace Episcopal Church in Fort Wayne, Indiana, the Rev. Isaac I. Ihiasota, leads a medical mission to Nigeria every other year and he was going again this July. One member of his mission team was a neurologist experienced in treating Meige's syndrome with Botox.
Dr. Shari DeSilva, a member of Grace Church, previously served as chief of the neuromuscular section of the Veterans Affairs Medical Center in Washington. She was the main person seeing such cases from Virginia, West Virginia, Washington and Delaware because the smaller VA centers sent their cases to her. DeSilva worked, also, in academic medicine and had trained two fellows and several residents to perform the procedure.
DeSilva first learned about the medical mission trip in March when Ihiasota asked her to go. She refused. That was before either of them knew of the priest with Meige's syndrome. And it was before Shari DeSilva's discussion with her Lord. She tells it best:
'My rector had been trying to get me to accompany him ... He told me that his mentor, Canon Goodchild, had been a physician who had gone on a medical mission to Nigeria 20 years ago, and after ‘seeing the need, he went home and immediately gave up his practice, entered seminary, and spent the rest of his career in Nigeria.' Canon Goodchild, my rector went on, his eyes burning with enthusiasm, was ‘a living saint' and now lived retired on a tiny farm in England, devoting his life to poverty and good works.
The Lord speaks clearly
'I listened to this eulogy with horror and promptly told my rector that I did not have enough annual leave left to accompany him to Nigeria. I did not mention that medical-conference leave did not fall under annual leave, and later that evening, I explained this omission to Jesus Christ by saying that Father Isaac simply didn't understand what neurologists do. After all, as I explained to the Lord, anybody can go do primary care, and I wouldn't be any better than anyone else. It wasn't like I was an ophthalmologist and could do 50 cataract operations and ‘make the blind see' again. There wasn't any point in me personally going ...
'Two days after my careful explanation to the Lord I got my free copy of Episcopal Life with Canon Mauney's advertisement for a neurologist to go to Nigeria to ‘make the blind see.'
'If you hear the Lord speaking to you clearly, it's a good idea not to make him raise his voice!'
DeSilva and the rest of the team leave for Nigeria July 28. The cost of the Botox, according to DeSilva, is greater than the combined cost of all the other medications they are taking. She wrote the manufacturer, Allergan Inc., which has agreed to donate the Botox. Anyone who would like to help may contact her or the Rev. Isaac Ihiasota at Grace Episcopal Church, 10010 Aurora Place, Fort Wayne, Ind. 46804; 260-432-9221.
To respond to this story, write to Nan Cobbey at ncobbey@episcopal-life.org.
To learn more:
Grace Episcopal Church and its mission: www.gracefwi.com
Meige's syndrome: www.uscneurosurgery.com/glossary/m/meiges%20syndrome.htm
Botox: www.botox.com
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